Alexx here. Today’s post will be brief as I’ve been up for 35 hours and feeling a bit delirious. We had a rough day but mom is doing better now. She is smiling and insisting I update her blog so everyone knows how she is doing. She welcomes your kind words, love and support. Feel free to post old memories and pictures on her Facebook wall which I can then read to her.

April 28th Day +21

Today was pretty quiet. Not much happened during the day. In the afternoon I started to feel a bit more tired. I slept a lot and wasn’t in the mood to drink ensure. My labs and vitals were good.

Volunteers came into my room and played music for me. They played a Hebrew song and then switched over to the Beatles. They didn’t know any DMB.

In the evening the nurse checked my vitals and my temperature was 37.4. The covering Doctor sent blood cultures since this could be a low grade fever in a post-transplant patient.

April 29th Day +22

I had a restless night. I was feeling very anxious and the alarms on my IV pumps kept going off. This happens a lot; usually when there’s a kink in the IV tubing, or air in the line, or who knows what else; its very loud and annoying. Alexx slept over and neither of us really were able to sleep. Around 5am I felt very nervous and also was shivering. I didn’t feel cold, just anxious. Alexx grabbed the nurse and my temperature was 36.8 with stable vitals at that time. At 630am I wasn’t feeling well so the nurse came back and my temperature was 39C (or 102.2 C) my first real fever. Initially my blood pressure was okay (well slightly lower than its been all week) at 142/80, but over the course of an hour it started to drop and went went dangerously low, suggestive of sepsis. They drew more cultures, restarted aggressive IV antibiotics (Meropenem/Vancomycin), and gave me 2L of Normal Saline. My blood pressure improved fairly quickly and stayed between 120-140/70-88 all day.

They spoke with infectious disease and it was decided that the Hickman catheter needed to come out, just in case it’s the source of infection. A surgeon came in and pulled it out. It hurt during the removal, but now I feel okay, just sore. I have 2 IVs in my hands now. It’s unclear where the infection is coming from, we will see what the blood and urine cultures show. Alexx will also ask about getting CT scans of my lungs, sinuses, and possibly abdomen tomorrow to further look for the source of infection.

It’s now 8pm and I’m feeling better. I did some PT moves, my breathing exercises, and drank some Ensure. Hopefully tomorrow will be better.

I feel a little bit proud when I am reading all the stories of people doing HSCT.
Proud of them, showing the world, that fighting MS
is possible. I, m waiting for trails in Holland or for the lottery, so I can go abroad.
Keep strong, you are doing fine and will be back on your feet in no-time!!!